I was hoping you all might be able to answer a few questions I haven't been able to answer on my own.
For brief context, I've been experiencing a number of unknown health issues over the last several years. The TL;DR symptoms have been:
- Soul-crushing fatigue
- Arthritic pain for the first few years (hands, feet) and then biliary colic-ish (middle shoulder blades, front upper quadrant) pain in the last few years
- Hodgepodge of autonomic symptoms (thus far attributed to diagnosis of postural orthostatic tachycardia syndrome)
I've had a positive ANA a few times since everything started, however my symptoms have been general enough / titers low enough that it was mostly dismissed because healthy people have positive ANAs blabla.
I was recently sent back to a rheumatologist to be looked over again since it has been a few years since I've seen one. She ran another ANA panel and I tested positive again with a 1:160 speckled + 1:320 multiple nuclear dot pattern - to which I am being hot potatoed back into the referral process (she wants me to see a liver doctor 3ish months from now).
Although I understand my doctors are the final say on interpreting my situation, I was hoping if you folks could answer a few questions I haven't been able to answer on my own.
I keep seeing reference to the multiple nuclear dot pattern being "highly specific" to PBC. Is it ever not meaningful? Knowing what you know from your PBC post-diagnosis education, how insistent might you be for further investigation if you had my labs and ran into a dismissive doctor?
I've read that PBC usually comes with elevated liver enzymes. For at least as long as I've been sick, I've had elevated bilirubin usually somewhere between 1.5 to 2.0 mg/dL (0.0 - 1.2 ref). Until now, I haven't thought anything of my periodic yellow eyes because I was told I had Gilbert's Syndrome by someone somewhere along the line. I'm not aware of ever having elevated ALT, AST, ALP etc., only the bilirubin. Does elevated bilirubin ever occur in isolation without the other markers in PBC? I'm unsure if it's just a coincidence.
For the first few years of being sick, I was super itchy all the time (especially at night). Over time, the itching lessened and now only happens infrequently. I haven't thought much of it since the fatigue / pain took center stage, but I've read that severe itching is a thing with PBC. Can symptoms like that ever spontaneously resolve themselves without treatment?
Any information, resources, or personal experiences you all might be able to share would be really cool.
Thanks for taking the time to read!